November 19, 2019November 15, 2019
This Is What I’m Grateful for Following My Family’s Fabry Diagnoses
Chronically Caring – a Column by Morgan Yontz, Columns
Being diagnosed with Fabry disease turned my world upside down. Finding ways to cope and accept my new life, ... Read more
November 13, 2019
Rare Disease Film Festival Highlights Patient and Researcher Unity
News
Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing ... Read more
November 8, 2019
Managing the Gastrointestinal Symptoms of Fabry Disease
Health Insights
Fabry disease is a rare X-linked genetic disease characterized by the buildup of a type of fat called globotriaosylceramide ... Read more
November 6, 2019November 6, 2019
Kidney Biopsy May Help Diagnose Female Fabry Patients, Case Report Suggests
News
Kidney biopsies can be instrumental in diagnosing Fabry disease, particularly in females for whom symptoms can vary widely, a ... Read more
November 6, 2019November 4, 2019
Walking a Mile in My Mother’s Shoes
Columns, The Fabry Files - a Column by Eunice White
They say you never truly know what someone else is going through until you walk a mile in their ... Read more
November 1, 2019
Dealing With Fabry Crises
Health Insights
Fabry disease is a rare genetic disease characterized by the buildup of a type of fat called globotriaosylceramide (Gb3 ... Read more
October 30, 2019October 30, 2019
Rapidly Aging Cells May Contribute to Shorter Lifespan of Fabry Patients, Study Finds
News
Certain cells in patients with Fabry disease seem to age more rapidly than in healthy people, which may explain ... Read more
October 23, 2019October 23, 2019
PRX-102 Improves Kidney Function in Fabry Patients, Preliminary Phase 3 Data Show
News
Treatment with PRX-102 (pegunigalsidase alfa) can safely and effectively improve kidney function in Fabry disease patients, according to preliminary ... Read more
October 22, 2019October 18, 2019
Learning to Make My Voice Heard
Chronically Caring – a Column by Morgan Yontz, Columns
I have always been the type of person to go out of my way to make sure I don’t ... Read more
October 21, 2019
Is Fabry Disease Going to Affect My Life Expectancy?
Health Insights
Fabry disease is a rare genetic disorder characterized by the body’s inability to break down a type of fat ... Read more
October 16, 2019October 16, 2019
‘Significant’ Levels of Pain Reported by Fabry Patients in Large Survey
News
Even with treatment, people with Fabry disease often experience pain to an extent that it affects their quality of ... Read more
October 16, 2019November 1, 2019
Attending a Fantastic Family Camp Full of ‘Fabbers’
Columns, The Fabry Files - a Column by Eunice White
Fabber. Have you ever heard that term? It’s used to describe those with Fabry disease. I recently spent a ... Read more

November 19, 2019November 15, 2019

This Is What I’m Grateful for Following My Family’s Fabry Diagnoses

Chronically Caring – a Column by Morgan Yontz, Columns

Being diagnosed with Fabry disease turned my world upside down. Finding ways to cope and accept my new life, as well as that of my son, was crucial. Reminding ... Read more

November 13, 2019

Rare Disease Film Festival Highlights Patient and Researcher Unity

News

Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing oxygen tanks this Nov. 9 and 10 in San Francisco. ... Read more

November 8, 2019

Managing the Gastrointestinal Symptoms of Fabry Disease

Health Insights

Fabry disease is a rare X-linked genetic disease characterized by the buildup of a type of fat called globotriaosylceramide (Gb3 or GL-3) inside cells, resulting in a variety of ... Read more

November 6, 2019November 6, 2019

Kidney Biopsy May Help Diagnose Female Fabry Patients, Case Report Suggests

News

Kidney biopsies can be instrumental in diagnosing Fabry disease, particularly in females for whom symptoms can vary widely, a new case report contends. The report, “A case of female ... Read more

November 6, 2019November 4, 2019

Walking a Mile in My Mother’s Shoes

Columns, The Fabry Files - a Column by Eunice White

They say you never truly know what someone else is going through until you walk a mile in their shoes. Let’s rewind to when I was growing up. Whenever I ... Read more

November 1, 2019

Dealing With Fabry Crises

Health Insights

Fabry disease is a rare genetic disease characterized by the buildup of a type of fat called globotriaosylceramide (Gb3 or GL-3). This Gb3 buildup in the cells and tissues ... Read more

October 30, 2019October 30, 2019

Rapidly Aging Cells May Contribute to Shorter Lifespan of Fabry Patients, Study Finds

News

Certain cells in patients with Fabry disease seem to age more rapidly than in healthy people, which may explain why patients have a shorter lifespan compared to the general ... Read more

October 23, 2019October 23, 2019

PRX-102 Improves Kidney Function in Fabry Patients, Preliminary Phase 3 Data Show

News

Treatment with PRX-102 (pegunigalsidase alfa) can safely and effectively improve kidney function in Fabry disease patients, according to preliminary data from a Phase 3 clinical trial. One year of ... Read more

October 22, 2019October 18, 2019

Learning to Make My Voice Heard

Chronically Caring – a Column by Morgan Yontz, Columns

I have always been the type of person to go out of my way to make sure I don’t inconvenience others. Raised to stand on my own two feet, ... Read more

October 21, 2019

Is Fabry Disease Going to Affect My Life Expectancy?

Health Insights

Fabry disease is a rare genetic disorder characterized by the body’s inability to break down a type of fat called globotriaosylceramide (Gb3 or GL-3). This is due to a ... Read more